Sunday, July 09, 2006

To sleep, perchance to breathe. . .

Well dear hearts, here begins the story of my adventures in sleep apnea.

A few weeks ago, I had the pleasure of a migraine followed by almost two weeks of really feeling bad: lethargic, irritable, emotional. More than usual, more than PMS. It was not a good time. This “not good time” was promptly followed by another migraine and a special encore appearance of “really feeling bad.” I, as I am wont to do, began to self-diagnose my problem. The suspected culprit: low thyroid. I had enough of the symptoms that it seemed like a possibility (I’m sure doctors just L-O-V-E the internet) and, as it was well past time for my annual physical, I decided to talk to the doctor about it.

Well, my blood work came back fine. Shoot! I was really hoping for the low thyroid. I would take a pill and perk right up. All is said and done. Now I had to actually talk to my doctor about my vague list of symptoms. If you’ve ever had a vague list of symptoms you will understand the dread feeling of having to speak to the medicine man about it. My doctor was great. He actually listened and looked like he cared. (Good job, doc!) He asked me some more questions including, “Do you ever wake up and feel like you are choking?” Um... well, sort of. Occasionally. More like I wake up gasping for breath. The medicine man decides to send me for a sleep study. He explained that all of my symptoms are those of a person who isn’t getting enough sleep and that I should do this study and we’d go from there. I wasn’t an obvious case because it is usually a man who is snoring so loudly his significant other can’t sleep in the same room. He wrote out a referral and sent me on my way.

The referral called for a split sleep study with CPAP trial. CPAP? I go home and get online and at one sleep apnea site I find this description: CPAP works by gently blowing pressurized room air through the airway at a pressure high enough to keep the throat open.” Oh, that sounds simple enough. (Insert foolhardy optimism here.)

After making an appointment confirming that my insurance does indeed cover a sleep study ($4700!) I’m ready. Or so I thought. For the 10 days or so before the study, the disharmonic convergence of my life events led to the most interrupted sleep I have experienced in a loooooong time. I’m a wreck. I’m barely functioning. In this compromised state of being, I had the following expectations:

I would actually get some sleep during the sleep study.

I believed them when they said it only would take a few minutes to get used to the CPAP contraption.

With the CPAP on, I would get some more sleep. Better sleep. Sleep with oxygen! Whoopee!

Woe, woe, woe to those with such expectations for they will be dashed to the ground and crushed.

I arrived at the sleep disorder clinic just before 9 pm. I had faithfully brought with me my favorite pillow, dutifully showered and shampooed and used no hair products or lotions per instructions, and carried with me about 10 pages of sleep questionnaire and sleep journal they had requested I fill out. My sleep technician takes me to the room, basic inexpensive hotel/hospital room standard. There is a television playing, a night stand with booties, a toothbrush, tissue, etc. I get changed and the 30 minute wiring begins. And when I say wiring, I mean 29 some-odd wires attached from my ankles to the top of my head, including the front of my throat so they can record my snore. How nice. They should call him a sleep electrician. Additionally, I get the pleasure of two elastic straps around my waist and below my armpits to help measure my breathing, a pulsox measuring device, and finally, as I get into bed, a plastic tube to go in my nose. We’ve all seen those oxygen tubes that people wear in the hospital. This tube looked like that except the tube was very thin and, in addition to the two prongs to go up my nose, there is a third, longer prong which goes in my mouth. The better to determine how much air you are breathing in and out, my dear.

Picture my face in these two pictures and the little metal box being blue instead of white. Such a dignified sight.

By the time this all gets finished, it is time for the testing of the equipment in which sleep study patient lays down on the bed and the sleep technician, from the “observation” room, gives commands like, “Flex your left foot. Now your right. Look to the left. Look to the right.” So, I’m hooked up properly and it now after 10:30. I decide to forgo watching television or reading The Banyan Tree and get right to the work of sleeping. I roll over on my side and get some sleep, wake up ask to use the bathroom, am unplugged from the pulsox finger torturing device, unwrapped from the nose/mouth tubing and draped with the blue box containing the 29 leads I’m hooked up to. I do my thing, get retortured, rewrapped, undraped and replugged back in. My sleep technician asks me to try sleeping on my back for awhile. Sure. No problem. After a time (I have to be vague about the time of things from here on out, because, of course, there are no clocks anywhere) he comes into the room and tell me that “we” will be trying out the CPAP now.

This post is getting long (over 900 words, so far) and so I will leave you with the following information:

I’m claustrophobic.

I was sort of freaking out.

I had to use the restroom at least three more times that night (I guess we could say it was a watershed evening!)

My technician tried out at least 6 contraptions on me, two of which that looked like this:

This is the panic-inducing version. Don't ask me why, but the cover the whole nose thing made me feel like I was being suffocated. Oh, and when you open your mouth wearing one of these, air blows out. So weird!

This is the type that worked best for the longest amount of time. I wish we had worked with this one more because I think I could have dealt with it eventually. The nostril plugs started hurting after awhile so we moved on. Sigh.

I slept very little for the rest of the night

While technicians aren’t allowed to tell you anything, mine said I would probably be sent back for another full night with the CPAP after talking with my doctor (panic, gasping, nooooooo) and that I could make my own assumptions about whether or not I have sleep apnea (ya think?)

I left depressed, gooey from electrode glue, tired, weepy. When I went to sleep that night, it was with the knowledge that there were going to be episodes of at least 10 seconds at a time when I wasn’t breathing. I knew this was what the doctor was looking for, but knowing it is different.

And that, dear friends, is the condensed version of my new adventure in sleep apnea. I’ll keep you up-to-date as there is new information to share.

Thanks for the sympathy, Jaymarie! Er... regarding the family, Paul is doing a pretty good job of it, Colin knows the look in my eye that requires an immediate backdown and Marley, well, she will not be denied so we sometimes depend on the kindness of friends to get her out of my hair!

I have been doing better the last few nights at least in getting to bed at a decent hour and more or less sleeping through the night.

Scary stuff that equipment! Hate talking to the doc about vague symptoms. I've hoped for the low thyroid diagnosis too so I could just take a pill and start feeling more energy (sad). Guess what? My blood work came back normal too (more or less) and I have yet to talk to him about my snoring. I did find a new pillow (cost WAY too much money) that has actually helped keep my airway open at night and I feel like I'm getting more sleep. Hope you can get this worked out. Sleep deprivation is horrible.

My husband has used a CPAP for sleep apnea for 5+ years now, also favoring the snorkel-style over the mask (but his head gear is different from the pic you showed). The nostril plugs come in different sizes.

Some things we've learned:CPAP gear is usually a better value online, out-of-pocket than it is through insuranceget a humidifer with your CPAP, to protect your sinusesget a thermometer for your bedroom and insulating wraps for the hoses, lest the water in the humidified air start condensing and spraying up your nosesupport the weight of the hose to reduce pressure of the gear on your nose - elastic cords tied to the head of the bed work well

The discussion forums at sleepnet.com are an excellent (if somewhat repetitive) resource and the reviews on new CPAP equipment can be very helpful.

It does get easier (except for the sleep studies - those never really go "well"). Good luck.